“After my parents moved to Florida to retire and create new lives for themselves, we thought things would be fine; if something happened to one of them, we could hop on a plane and take care of things. Unfortunately, it was not that simple. Dad broke his hip and needed short term rehab – unbeknownst to us; he had been taking care of Mom as her dementia advanced. Like many parents, he had kept us in the dark about how much she depended on him, and like many children, we chose not to see the realities of her decline. Now we were faced with a crisis; who would take care of Mom while Dad was in rehab. None of us children lived closer than a plane ride away – all of us with jobs and families of our own. How would we deal with this?”
This is a true story that faced my client and her family; one that may happen to you or someone you know. Fortunately, there are many resources available to help both in the planning and ongoing care of a loved one who lives far away.
You Aren’t Alone
If you are a long-distance caregiver, you are not alone. According to the National Institute on Aging, approximately 7 million adults are long-distance caregivers, mostly caring for aging parents who live an hour or more away. Historically, caregivers have been primarily mid-life, working women who have other family responsibilities. That’s changing. More and more men are becoming caregivers; in fact, men now represent over 40 percent of caregivers.
Create A Plan
If you become faced with the possibility of becoming a long-distance caregiver, you and your family should come up with a plan before you need one! Your parents or spouse should be part of the discussion and know what to expect - the worst time to try and come up with a plan is during a crisis. A care plan should include emergency information details, options for care (in-home vs. relocation) and available resources.
Here are some simple steps to consider:
- Discuss the care plan with family members. Explore ways to share caregiving responsibilities
- Adjust the care plan, as circumstances change
- Introduce yourself to the professional care providers — family physician, home care worker, nursing home staff, and others
- Develop an informal care network. Ask relatives, friends, and neighbors to check-in on the care recipient regularly and call you if they notice problems
- Keep in touch with formal and informal caregivers. Make sure they know how to reach you, in case of emergency
- Look for savings plans and discounts for long-distance telephone and travel
- Prepare for emergencies. Be ready to travel at a moment's notice if possible.
- Plan for the future. Discuss and make legal and financial arrangements.
- Be realistic about the care recipient's care requirements
- Be realistic about how much care you can provide
- Look for ways to balance your long-distance caregiving responsibilities against your other obligations, such as your health, family, and work
- Develop a support group of friends, fellow caregivers and, if necessary, professional counselors to whom you can turn
Forms of Caregiving
Long-distance caregiving takes many forms—from helping manage the money to arrange for in-home care; from providing respite care for a primary caregiver to helping a parent move to a new home or facility. Many long-distance caregivers act as information coordinators, assisting aging parents to understand the confusing maze of home health aides, insurance benefits, and durable medical equipment.
Long-distance caregiving can be figuring out what you can do to help Aunt Betty sort through her medical bills or thinking about how to make the most of a weekend visit with Mom. It can include checking the references of an aide hired to help your grandfather or trying to take the pressure off your sister who lives in the same town as her aging parents and her aging in-laws.
Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver who is in the home. The can play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating assisted living and nursing home care. Some may even help a parent pay for care, while others step in to manage finances.
Caregiving is not easy for anyone, not for the caregiver and not for the care recipient. From a distance, it may be especially hard to feel that what you are doing is enough, or that what you are doing is important. It usually is.
If you decide to work as a family team, it makes sense to agree in advance how your skills can complement one another. Ideally, each of you will be able to take on tasks best suited to each person’s abilities or interests. For example, who is available to help Mom get to the grocery store each week? Who can help Dad organize his move to an assisted living facility? After making these kinds of decisions, remember that over time responsibilities may need to be revised to reflect changes in the situation or your parent’s needs. Be realistic about how much you can do and what you are willing to do.
When thinking about your strengths, consider what you are particularly good at and how that skill might help in the current situation:
- Are you best on the phone, finding information, keeping people up-to-date on changing conditions, and offering cheer?
- Are you good at supervising and leading others?
- Are you comfortable speaking with medical staff and interpreting what they say to others?
- Is your strongest suit doing the numbers—paying bills, keeping track of bank statements, and reviewing insurance policies and reimbursement reports?
When reflecting on your limits, consider:
- How often, both mentally and financially, can you afford to travel?
- Are you emotionally prepared to take on what may feel like a reversal of roles between you and your parent—and to respect your parent’s autonomy?
- Can you be both calm and assertive when communicating from a distance?
- How will your decision to take on care responsibilities affect the rest of your family and your work?
Consider joining a caregiver support group, either in your community or online. Meeting other caregivers can relieve your sense of isolation and will give you a chance to exchange stories and ideas. By focusing on what you can do, you may be able to free yourself from some of the worries and focus on being supportive and loving.
Do Your Best
Most caregivers report feeling guilty about almost everything—about not being closer, not doing enough, not having enough time. Worrying about being able to afford to take time off from work or the cost of travel can increase frustration.
You might think that being far away gives you some immunity from feeling overwhelmed by what is happening to your parent—but long-distance caregivers report that this is not so. Although you may not feel as physically exhausted and drained as the primary, hands-on caregiver, you may still feel worried and anxious. Many long-distance caregivers describe feeling guilty about not being there, about not being able to do enough or spend enough time with the parent. Remind yourself that you are doing the best you can within the circumstances, and you can only do what you can do.
Mandy Merkel CMC is the owner of Senior Resource Consulting. She is a licensed speech pathologist and a member of the National Association of Professional Geriatric Care Managers. In addition to the Georgia Eldercare Network and the Georgia Gerontology Society, she serves on the Board of Second Wind Dreams and is a resource consultant for the Alzheimer’s Association and the Georgia Healthcare Association. She is also the recipient of the Belmont Senior Living Blue Ribbon award for her service to the senior community.